Posts Tagged ‘End of Life decisions’

The Wall Street Journal had a February 19th front-page article on how much Hospice is costing Medicare with the emphasis being on those patients who go into home-based Hospice care and stay there for prolonged periods. While many of that group have Alzheimer's or other dementing diseases, others have chronic obstructive pulmonary disease (COPD, e.g., emphysema), heart failure or cancer. The average time spent on Hospice in 2013 alone was 93.2 days for people with Alzheimer's and similar dementias and they consumed 22% of the total Medicare spent on End-of-life (EOL) care that year.

The statistics in the article were striking: over an eight-year period (2005-2013) 107,000 patients had been on Hospice for much longer, close to a thousand days. That's a very small subset of all those who had sought out Hospice care during that timeframe, 1.3%, but that relatively small number of patients cost Medicare a huge amount, 14% of its total dollars spent on Hospice in that timeframe.

The program itself was originally set up for those whose physicians could certify were terminal, within six months of dying. The overall Medicare Hospice expense total in 2013 was roughly $15 billion and the WSJ's data references a study stating that that care, at least for those who did not have cancer, actually cost Medicare 19% more than for similar patients who did not seek out Hospice care.

That's especially true for those who have dementia, but other chronic conditions (where the time to death is less predictable than it often is for patients with cancer) clearly play a role also.

As I was not surprised there's often another side of the picture. I have had two examples in my extended family; one involving Paul, my son-in-law and the other Lynnette, my wife. My son-in-law's father had Lyme disease with significant brain involvement. He went from being a distinguished systems engineer to needing help with many of the activities of daily life. It was a long time before his family was able to get him on home Hospice; when they finally did, my son-in-law said to me, "it was the difference between day and night." The family really appreciated the care given to him during his final weeks.

Recently my wife had a major stroke and lived one week, one hour and seven minutes after the onset of the bleed into her brain. I had seen her stumble in our bedroom, realized she was unable to get up, carried her to our bed and called 911. We went from ambulance to a local hospital where CT scanner which showed a considerable area of bleeding in her brain. She was immediately moved to a bigger hospital where a neurosurgeon was available. He ordered a second CT scan which showed even more bleeding. All the things he could do would come with consequences she had always said she would not want to live with.

I was her health care surrogate and carried out her oft-expressed wishes, rejecting the surgery, so she went, several days later, to Hospice at a third hospital. The care there was exemplary, but this was clearly to be short-term, inpatient Hospice.

So when I read the WSJ article, I did so with a jaundiced eye, not from the viewpoint of a physician or a taxpayer, but from that of a family member who had experienced the positive side of Hospice.

The issue for me, as it was for my wife, is quality of life. That's a hard subject for many of us to discuss, but I think it's crucial. We had had those talks repeatedly over the past five or six years and both of us knew what the other wanted.

I don't have answer for others, but I urge you to think about the subject, talk about it with your spouse, significant other and children, whoever might be asked to make a choice for you if you are unable to make it yourself.

There was the other aspect we hadn't fully explored. Neither my daughter, who would have been the one to make choices for me if my wife was unable to do so, or a nephew, who would have been my wife's secondary decision maker, had been party to our discussions.

So what would have happened if Lynn and I had been in a car crash, had both been severely injured and our alternate health care surrogates had to make those tough choices?

I don't know the answer, but it's clear to me now that EOL discussions should involve more than you and your spouse or significant other.

It's also clear that neither Lynn nor I would have wanted prolonged home Hospice, but would have (I did at least) really appreciated its availability for relatively short-term care, whether in our home or, as it turned out in a hospital setting. You may or may not feel the same way.

Please think of having those talks now with whomever in your family might be called upon to choose for you.

An article in The New York Times (NYT) several days ago opened a new topic and re-visited an old discussion in our household. The title was telling, "At These Hospitals Recovery is Rare, but Comfort is Not" and talked about what Medicare calls long-term care hospitals (LTCHs). I had never hear of the term.

The article said there were 400 of these facilities in the United States, but lots of practicing physicians are unaware of them. I did an online search and found a 20-bed facility in thus category about 15 miles from where we live and a 63-bed hospital in Denver, roughly 65 miles away. I wasn't sure of any in the southeastern part of Wyoming, 40-50 miles north of us.

The Medicare website on Long-Term Care hospitals says they focus on those whose inpatient stay is likely to be more than 25 days. The contrast is stark as this is an age when many surgeries are done in a technically "outpatient" fashion (the current definition of an inpatient says you're in the hospital at least two midnights). Medicare says LTCHs specialize in treating patients, even those with more than one serious medical condition, who may improve with time and eventually return home.

Yet the NYT piece talks of patients who are critically ill, may be unresponsive, even comatose and, except for those who are younger and have been in an accident, may stay for months, years, or the rest of their lives. In 2010 another NYT article discussed significant issues with some LTCHs.

At that point my wife and I both said, "Don't put me in a LTCH!" We are 73 years old, relatively healthy at the present time, and enjoy life. We have living wills and medical durable power of attorney documents naming each other as first decision makers if we can't choose for ourselves.

I've mentioned before how my parents approached this quandary. Mom had a cardiac arrest at age 74, was resuscitated by Dad who was still a practicing physician, and lived 16 more years. But when she was in her declining last four years and they had moved from totally independent living to a seniors' residence, they encountered a situation that influenced their future decisions. Mom had a minor acute illness and moved short-term into an associated facility.

She was there for a few days to get some antibiotics and nursing care, but in the next room was a woman, the wife of one of their friends, who had been in extended care for seven years. For the last four of those she no longer recognized her husband, yet he requested treatment of her bouts of pneumonia on three separate occasions. Dad and Mom each said, "Don't do that to me!" They had signed the appropriate end-of-life documents before Mom showed signs of initial dementia.

A 2011 article in Kaiser Health News stresses that making end-of-life decisions can be tough, especially if they aren't made in advance. But a professor of ethics was noted as saying more than 90% of all families who have a loved one in intensive care want to hear prognostic information that will help them make those difficult decisions.

Hospital care has changed..a lot, since I last saw inpatients. It used to be that the physician who organized your treatment was the same one you saw in her or his outpatient office. Now the primary care physicians I know, unless they are part of a residency program, don't see their long-term patients at all when they are hospitalized. Instead patients see an ER doc, a hospitalist (physician whose focus is inpatient care) and, if they go to an ICU, an intensivist.

Intensivists are physicians who have completed specialty training, often in Internal Medicine or Anesthesia and then take an additional two-to-three year fellowship in critical care medicine (some are triple board certified, in lung disease (Pulmonology), for example. They are often thought of as primary critical care physicians and in major academically-oriented clinics and their associated hospitals (e.g., the Cleveland Clinic), they may provide most or all of the physician care in the ICU.

Do you need an intensivist?

The article from the NYT said we spend over $25 billion a year in long-term acute care in the United States., The path to landing in a LTCH often begins in an ICU. The major task for intensivists is keeping patients alive during critical illnesses. That often means deciding on short- or long-term-ventilator support, the possibility of a tracheostomy (a surgically created hole through the front of the neck into the trachea (AKA windpipe) to allow this, feeding tubes of several varieties or long-term intravenous access.

I don't ever want to be on a ventilator long-term. I might allow one short-term if I had a clearly treatable, potentially curable patch of pneumonia, for instance, but I would want to set a time allowance for that.

When my mother quit eating, her physician wanted to create a long-term method of feeding her, a percutaneous endoscopic gastrostomy (PEG). If someone cannot eat and needs to be fed long term, one method of doing so is to place a PEG tube through the wall of the abdomen directly into the stomach.

This could be done for someone who has had a stroke and is at risk of aspirating food if fed normally. In my Mom's case, by then she had developed significant dementia and Dad said, "We've made our decisions; she is not having a PEG tube."

She could have gone into a LTCH and lived a while longer, but Dad knew that her refusal to eat meant she had come to a logical stop point.

There are an estimated 380,000 patients in LTCHs at present. Some (roughly 10 to 15%) are there for appropriate reasons and have a reasonable chance of recovery; many are not. A study by a Duke critical care specialist found half who enter these facilities die within a year; a majority of the remainder are in "custodial care."

I don't choose to join their ranks.

So there are some decisions that you and your family may want to make. I'd suggest you read the NYT articles and think about what your choices might be. It's never easy, but a careful discussion in advance with your long-term goals in mind makes sense.